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These
Legs Just Keep on Kicking So
the patient goes to a neurologist. Every
night, he tells the doctor, he gets these creepy, crawly feelings
in his legs as he starts to drift off to sleep. It’s not pain,
exactly, but an irresistible urge to move his legs. He gets up,
does a few deep knee bends. That helps. The neurologist listens,
riveted. But
as soon as the patient goes back to bed, the creepy-crawlies start
up again. Sometimes, his legs start kicking periodically, too. So
he gets up and walks, for hours, until exhaustion overwhelms his
twitchy legs and frazzled psyche. With luck, he gets a few
hours’ sleep. “What
have I got?” the
frustrated patient asks. “I
don’t know,” the doctor replies. “But I’ve got it, too.” Sad
to say, this is a true story, told by a patient to Dr. John
Winkelman, medical director of the Sleep Health Center at
Boston’s Brigham and Women’s Hospital. Most
people, including many doctors, have never heard of Restless Legs
Syndrome, though this under-diagnosed neurological disorder ruins
the sleep – and the quality of life – of an estimated 20
million Americans. “But
people are going to hear a lot more about this disorder in the
next couple of years,” says Winkelman, “because we now
recognize how common it is and we’re beginning to get some
insights into its underlying causes.” Scientists
haven’t filled in all the blanks, but they have a pretty good
idea of what goes wrong in the brains of people with Restless Legs
Syndrome, thanks to brain scans and autopsies of RLS sufferers. In
the brain, the substantia nigra, the caudate nucleus and the
putamen, which control movement, appear to be somewhat deficient
in iron. That may impair the ability of brain cells to make the
neurotransmitter dopamine, says Dr. Wayne Hening, clinical
associate professor of neurology at the Robert Wood Johnson
Medical School in New Jersey. The
result is creepy-crawly sensations in the legs and the urge to
move the legs. These symptoms come on with rest or immobility and
are relieved – transiently - by movement. Many
people with Restless Legs Syndrome also have what’s known as
“periodic limb movements of sleep,” uncontrollable kicking
during sleep. Though
not fatal, Restless Legs Syndrome is a life-wrecker. It often runs
in families, suggesting a possible genetic factor, and can start
in childhood. “These
people can’t relax. They’re tired all the time,” says Jerry
Siegel, professor of psychiatry at the Neuropsychiatric Institute
of the University of California, Los Angeles and chief of
neurobiology research at the Sepulveda VA Hospital. “Of
all the disorders affecting sleep, this is the one that produces
the most chronic sleep loss, year after year,” says psychologist
Richard Allen of the Center for the Study of Restless Legs at
Johns Hopkins Bayview Medical Center. In fact, his research shows
that “quality of life is as impaired in these patients as in
patients with other chronic diseases like hypertension, arthritis,
diabetes, depression, angina or a history of heart attack.” Decade
after decade of insufficient sleep is just plain
“discouraging,” says Marge Fuhr, 67, a retired school teacher
in Boulder, Colo. “I’m just totally exhausted.” For
Mimi Lebien, 43, a self-employed medical historian in Covington,
LA, the worst part is the sense of “shame that comes with people
who can’t sleep.” Like Furh, Lebien is a board member of the
Restless Legs Syndrome Foundation. Her struggle with RLS began
when she was 7 or 8, on a long family car trip when she made her
brother and sister lie down on the floor of the backseat because
“I needed to kick and kick and kick….I kicked my legs halfway
across New Mexico.” Spouses
suffer, too. Tim Bemis, 42 and a software engineer who lives in
Bedford, used to get only two to three hours’ sleep a night.
Now, he takes medications for his RLS and periodic leg movements
and sleeps six or seven hours. In the old days, says his wife,
Anita Raj, 41, “he used to move every six seconds. I used to
count ‘one, one thousand, two one thousands…’ It would keep
me awake.” Even
now, she says, “there are probably 10 nights a month where we
sleep in separate beds.” So
what to do if you are among the millions with possible RLS? First,
if your regular doctor can’t help, contact a neurologist or
sleep clinic. You’ll probably be given blood tests for iron
levels. If these tests show low iron in your blood, taking oral
iron (ferritin) may help. (Don’t do this on your own. If you
take too much iron, you can develop a dangerous condition called
hemochromatosis, or iron overload, which can cause cardiac and
other problems.) If
your blood test is normal, however, you may still be
iron-deficient in the brain. In this case, oral iron probably
won’t help, but researchers are now trying to determine whether
giving RLS patients iron intravenously will. The
low iron levels that can lead to RLS
can have several triggers, including any condition that
leads to persistent anemia. Pregnancy, stomach surgery, kidney
failure and dialysis can also contribute. So
can certain antidepressants – those like Prozac (the so-called
SSRIs) that boost serotonin levels in the brain. Don’t quit
taking SSRIs on your own, but to talk to your doctor about
switching to an antidepressant that works differently, or adding
RLS medications to your regimen. If
iron supplementation and simple measures like avoiding alcohol,
caffeine and sleep deprivation don’t help, the next step is to
take drugs that boost dopamine activity in the brain. The
three most effective are –
Requip (ropinirole), Mirapex (pramipexole) and Permax (pergolide),
all approved for Parkinson’s disease. (There are no drugs yet
approved specifically for RLS.)
Sinemet (carbidopa-levodopa), another Parkinson’s drug,
is also used sometimes for Restless Legs Syndrome, but it can
sometimes make symptoms worse or appear earlier in the day.
Another dopamine-booster sumanirole, not yet on the market, is in
clinical trials now. (For more information on the trial, you may
call 617 527 3501 X115.) Opiates
(painkillers) can also help, including Percocet (oxycodone and
acetaminophen) and Tylenol-3 (acetaminophen and codeine). In some
cases, anti-convulsants such as Neurontin (gabapentin) may also. None
of these drugs is likely to provide total relief, but if they help
you get five to seven hours
of sleep a night instead of two or three, that’s huge. So
don’t suffer. If you think you have RLS, see a doctor.
Preferably, as Mimi Lebien of Louisiana puts it, one “who takes
you seriously.”
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